Friday, November 2, 2012

In a nutshell, I've had to come to terms that I need to have a near-complete shift in my way of thinking all things Elena. Basically, I've viewed E's movement patterns in terms of achieving her most "normal" gait/balance/posture/stance possible through her daily life--including planning what types of therapies/surgeries/equipment we need to make progress possible. At this point, we're more-or-less in a holding pattern, or plateau. And that feeling is new to me. It doesn't mean I won't try to challenge Elena or help her learn to use her body better--it means that I need to live more in the now instead of the future. Appreciate now, and realize that this probably isn't the best she'll ever move--but it might be, and we need to show Elena that this is okay.

This is okay. It's just a pretty big mental shift.

The good news is that Elena really likes to get 'in the mix'--with her classmates, with her family, outdoors, you name it. She's outgoing and adventurous, which makes giving her new motor challenges easy. Our Fall Bucket List gives us all some inspiration!

2 comments:

Anonymous
said...

You are right. You should never give up on Elena making improvements but yes you must accept she will never have a "Normal" gait and that is totally fine. You should focus on improving her alignment as much as possible and focus on how her body will function, not on making her body "look perfect" . Most important you should let her be a kid at this stage. Then as she gets older teach her more of the alignment concepts you mentioned in other posts. :)

Been thinking of you since the post before this one, and I'm glad to hear you've come to a new way of thinking about Elena and the way her body moves, although I'm sure it wasn't an easy shift. She is so lucky to have you as her mom, she is a fantastic kid, and the way her body moves is just one teensy tiny piece of the whole of her awesomeness, and that's what should be celebrated. Hope you all have a lovely holiday season. I'll send you a note with our info for the card exchange-Hannah would love to do it!

Recent Doodle Updates

INSTAGRAM

Search This Blog

Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.